Tragedy and Hope: the Voices of the Living Rare Community in Ukraine 🇺🇦
The Rare Advocacy Movement's Rare Families Financial Assistance Fund would like to thank Olha Urys' for writing the following community-based article to help give the rare disease community-focused stakeholders a glimpse into the lived experiences of four rare disease families impacted by the war.
The morning of February 24th has changed the life of every Ukrainian forever. There is not a single citizen of our country who has not been affected by war started by the Russian Federation. Millions of Ukrainians protect our freedom and piece. Civilians and children die. Thousands of houses will never be rebuilt. Numerous families will never come back home, because their home was destroyed by a missile or a bomb brought by a so called "peacekeeper." For decades, the psychological trauma will occupy the people who have lived through blockades, shelling, and occupation. Our brave defenders will suddenly find themselves being awakened by nightmares for a long time to come.
Today we shall speak about how the lives of four families who raise children with Duchenne Muscular Dystrophy (DMD) have changed when the horrors of war were brought to their home.
Iryna and Bohdan
Iryna Nesen lives in the town of Severodonets’k, Luhansk region with 8 year old son, Bohdan. The morning of February 24th 2022 started as usual for their small family – Iryna was getting ready to go to work; Bohdan was still asleep.
As Iryna was getting ready for work, her boss called and informed her that no one is to go to work because… the war has started. At 8:00 in the morning the airport was bombed and the air raid alarm began.
They decided to go to the local school to take shelter. Iryna thanks God that her child’s condition allowed them to do so. At first, Bohdan perceived everything as an adventure – spending a night in a shelter, tucked away in the basement. But as the days progressed, the noise from Grads (reactive systems of volley fire) and cannons were getting closer and closer. Iryna made the decision to move to a relatives home in another district of a town, with reportedly less cannons and bombings. The relative's home also had a basement underneath the house, so there was no need to travel to another building to take cover from shellings.
Bohdan, 8 years old, is terrified of shellings. Before the war, life was only him and his mom. Bohdan takes comfort in his beloved hobby. He absolutely adores geography.
Irina stocked a year's supply of most of the medicines required for her son. Unfortunately, most of the supply of Bohdan's medication remained in their apartment, which has been shelled three times already. There’s no electricity, water, nor gas in the apartment. The windows are cracked from the explosions.
Before the war Iryna used to take her son to several doctors with a variety of specialities for his medical condition. These doctors included but are not limited to an orthopaedist, neurologist, rehabilitologists, etc. in Kharkiv.
Bohdan was also undergoing massage therapy which is an important therapeutic treatment for boys diagnosed with DMD.
Bohdan had also started visiting the swimming pool, but the pool has already been destroyed by a bomb.
Iryna continues rehabilitation therapy for Bohdan at the home that they have taken refuge in. Iryna is a very positive person. She believes that the war will end soon, the cities will be rebuilt, and that life will return to normal. She continues to believe that her child will have the opportunity to enjoy his life.
Anna and Maksym
Fifteen (15) year old Maksym Fedorenko from Kharkiv has a mother, father, younger 6 year old brother and two dogs.
On February 24th, 2022 at 5:00 in the morning, the Fedorenko family woke up to shellings blowing out windows and doors. The parents quickly rushed to cover their children with duvet blankets. They were caught off guard as they were still in their underwear.
The Fedorenko family quickly gathered their documents, dogs and started their journey to flee the city under the sound of sirens.
The roads were not yet full of cars but it still took them 19 hours to get to Kropyvnytskyy, where they stayed for a night in a rehabilitation centre, and continued their trip to Italy.
It took them 13 days by car to get to Italy.
The family only stopped to occassional get some much needed rest. Anna, the family's mom, tells that they spent two days in Moldova recovering from the traumatic experience of fleeing their home.
Romania, Moldova, Serbia, Croatia, Italy – a whole story can be written to tell about their hospitality. The family received clothes, shoes and food. "We were accepted as dear friends," Anna tells.
The long trip was hard for Maksym. Parents were trying to escape his legs contractures.
At home, Maksym was always exercising. He used to stand in a verticalizer and visited the swimming pool twice a week.
In 2021, there were good discounts offered for Maksym’s medications, so Anna was able to purchase a 2 year supply of her son's medicine. Unfortunately, all of Maksym's medicine remained in their ruined apartment. In addition to Maksym's 2 year supply of medicine, his mini-medical centre consisting of a verticalizer, cough-assist machine, etc. (running a total cost of over 300 thousand hrivnya) also remained in their damaged apartment.
During the writting of this article, Maksym’s family was staying in Italy on a 5-day quarantine. As Anna said – the country has provided them with social dwelling, products and all the medicines needed for Maksym.
Maksym’s condition in Italy has deteriorated significantly as during these two weeks on the road Maksym stayed seated or in bad positions for his body's condition. He could not receive his regular rehabilitation therapy.
The current psychological trauma of this entire ordeal has had a noticeable impact on Maksym and his younger brother. Both children express fear at the thought of returning home. They fear reliving the things they have experienced. They are even scared of the very word “siren”.
Anna’s youngest son is now drawing scary pictures of the war. Anna has expressed that she is worried to tears that she has fled to a country abroad and that she cannot help her Motherland during such difficult times.
Svitlana and Misha
Thirteen (13) year old Misha Mykhaylenko lives with his mother and father in the town of Kamyanske, Dnipropetrovsk region, 40 km away from the city of Dnipro.
On the morning of February 24th 2022, when the siren sounded for the first time, Misha's parents started dressing him. He has not walked for 4 years and weighs 60 kg. Getting ready quickly is quite problematic, although the family lives on the ground floor and has a ramp. By the time they gathered belongings and went outside, people were already returning from the shelter.
Svetlana can't even imagine her son being in a bomb shelter or basement, where it is very cold and humid. Misha currently has about a month's worth of medication. Olena Yarmolenko, a volunteer from Kyiv, donated money to the family so that they could purchase Misha's medication.
Misha is taken care of mainly by his mother, Svetlana. She conducts physiotherapy and massage therapy to assist Misha's DMD symptoms. Since the war began, Misha barely goes outdoors anymore. This is in large part because of how difficult it is to get him dressed. However, the family fears that if they were to go out with Misha and where to catch a siren, they may not be able to get Misha into the nearest bomb shelter because not all bomb shelters are equipped with ramps.
Misha has lordosis, so he can spend no more than three hours in a wheelchair. Misha's symptoms include back pain, a fast pulse and sleep disturbances.
Doctors from Kamyansky are not aware of how to treat DMD. There are no pediatric pulmonologists or cardiologists in the city, only in the city of Dnipro. Before the war, a surgeon, ophthalmologist and neurologist came to see Misha at his home.
In September of 2021, in Kharkiv, Misha ordered an orthosis chair. For 2 years, Misha has been taking the experimental drug “Tamoxifen Ebewe" – since taking the experimental drug, his lab tests have improved significantly.
Now the social taxi that the family relied on to transport Misha to the clinic is no longer operating. So there is no way for Misha to get to the clinic at the current moment.
Svetlana says that despite the diagnosis and the war, Misha's mood is consistently optimistic. He is no longer afraid of sirens and constantly calms her down. He believes that the war will end soon and everything will be fine, but for now at home he chooses to feel comfortable and relatively safe.
Olha and Maksym
Olha Voyna and her eleven (11) year old son Maksyim live in the town of Lyubotyn in the Kharkiv region.
Olha's mother, who lives in the village of Vesele in the Kharkiv, a region on the border with Russia, told Olha about the start of the war and the fact that they were being shelled.
Due to Maksyim's medical conditions, Olha is unable to go to the shelter with him. Instead, Olha covers all the windows and doors with warm blankets and prays that the shells and the shock waves will bypass their house, which, by the way, survived the Second World War.
Maksyim is very afraid of the roaring cannonade of shells, because they make the whole apartment tremble. At such moments, he is always comforted by his favourite cat and Olha, both of whom Maksyim does not let go of, not even for a second.
Along with them lives Maksyim's paternal grandmother, Olha’s mother-in-law, who has now taken on the duties of all the household chores. Olha is very grateful for her, because she helps with household chores; in addition to going to the store and pharmacy.
Maksyim did not have the opportunity to start hormonal treatment for his DMD before the war began. Olha and Maksyim plan to start treatment after the war ends. Currently, Maksyim needs a special enteral nutrition Nutridrink Compact Fiber, which helps to normalize his intestinal peristalsis. Without this drug, Maksyim's body begins to experience intoxication as a direct result of constipation. Unfortunately, getting this nutritional product for Maksyim is difficult and very expensive. Olha's supply of this special enteral nutritional food product is running low and soon there will be no more left.
Olha is an optimist and says that "notwithstanding all difficulties, it’s necessary to accept them, live by every day and hope just for the better. Everything will be fine!"
As we simply read glimpses into the current lived experiences of these victims of war, these mothers, fathers, grandmothers, children, brothers and sisters, must find the strength to fight every day. They must fight the progression of a debilitating rare disease, fight to accomplish daily chores made difficult by the war, find alternative solutions to the lack of medication and medical attention, fight fear and despair, fight for their lives. They will continue to fight and they will win.
If you are able, please consider contributing to the Rare Families Financial Assistance Fund designated specifically to assist the families impacted by the Ukraine crisis. The direct link to donate is bit.ly/rarefamilies.